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OK, I hate that shit, but it keeps me from writing three paragraphs to explain all this again. Excuse the brevity.

So, here I sit this morning, and am having such a mean time trying to just get out of the pajamas and into my day clothes. The shower will come later.

I pride myself in the times that I come here and donate threads such as, “My Plates”, but too often, many of the readers have noticed that “Moffie” doesn’t open up and tell of his personal challenges very often. That is true, mostly because I am a hopeless Capricorn, and I just gotta show a well rounded “stage” but never let ‘em see your soul.

Well this morning, I am going to do just that.

Yesterday was a fabulous day, the nausea was under submission, the weather was sunny, with a gentle 79 degree breeze, I had loads of energy for the first time in several days, I managed to shop two markets, get the dogs to their appointments, visit the shoe repair, stop in at the Democratic Party Office to drop off some flyers for the first ever AIDS Walk here, go back and pick up the puppies, came home to my sweetie, cooked up a delicious meal of Squid, Pilaf, and Asparagus, and over all my world was OK.

I awoke this morning for the first time in weeks to a full nights’ sleep, as usually I am up at 2am, ‘cause I just can’t sleep sometimes. The energy level sucked, and I am just sitting in my chair and having a terrible time to do anything. I hate this part of HIV. I just cannot tolerate not being able to sustain a “normal” life anymore. Granted yesterday seems like it was a full day, but mind you, I normally would have been able to accomplish twice that much with energy to spare; but not so much any more.

Last week was a stellar week that started out with a tooth which broke in half along with Friday’s Lunch. Oh how special. The case manager called just before she left for the airport for her three week vacation, (much deserved) and told me to just find a good dentist (out of the one recommended that would do any work for people with HIV). So, by then the dentist, who did the much needed work on my teeth in 2003, was already out of the office and so the weekend was filled with fun with teeeeef… Monday was full and I could not find the number of my dentist in Tucson until Tuesday. I called his office, and his wife was really happy to hear from me and found me a slot on Wednesday to come in for a “look-see”. I went; he was having a slow day and immediately filled the tooth. All together about a $750.00 procedure. Our allotment is only $400 a year. I shared this with him, to which he responded, “My job is to keep your mouth healthy, your job is to survive with quality, and the money will all come out in the wash”. Now you know why I travel the 60 miles to Tucson for dentistry. Out of the visit, we may now have two more dentists who are willing to work HIV and live right here in my town. He is very special.

The next day, Thursday, I had to go back to Tucson to have a Candiloma removed from my butt. It has been very uncomfortably growing for the last two years, and was about one inch long. It had become really irritating, and was causing me some internal emotional problems I just didn’t want to live with anymore. Finally, Thursday was the day for that exercise, and it was very quickly and efficiently lasered off, and sent to the lab to check for Cancer cells. (HPV, if you didn’t guess) With the change of seasons, my Foliculitis is in full bloom, and for someone who is a teddy bear and loaded with hair; it is one of the most irritating sides that has been with me for 20 years.

I am still working through adapting to the Trizivir, and I have also been sick lately, and when it all sorta bunches up, you tend to get the blues. Now is the time that I have to go back to my “AIDSmeds.com file” and re-read some of the things I have written for you all to read. It isn’t always easy to make the connection from theory to reality, and I just wanted all of you to know that I know that with intimacy. I tend to be over emotional at times and can easily tear up over a commercial that touches me. I am also passionate about my HIV work, even though none of it is generating any cash as of yet. Maybe someday as it would be nice to not have to fill up the tank out of our bank account every time.

This afternoon I have to go 80 miles round trip to a Ryan White Consortium meeting that I dare not miss, because we are going to be discussing the allocations of funding for the next fiscal year, starting in April of next year. This is one of the most important and most critical meeting rounds, starting today, that an HIV+ person can be involved with. This all means that I must put on a “happy face” get on the “stage costume” and present with “emotion, knowledge and passion”. I just don’t feel up to it, but I will do it because it is so damn important for all of us.

I cannot tell you how tempted I am to just dump this page, because I hate complainers, and don’t feel at all comfortable in doing this post. I did it because I don’t want anyone here to think that my life must be a piece of cake, and think that I just spew all that positive and uplifting shit, and never have to deal with the reality of this god-damned virus! I do, and I hate much of it. I just have a difficult time some days, taking all the stuff that I write here to heart and to “actually create” a good day out of a totally shit one.

Many of you will understand my rant this morning, because you are also dealing with the same challenges. I guess I need to figure out some compromise with my work and my life, because some days now, I just feel like I am suffocating, simply because I cannot find the mental clarity to function normally and do a collection of even simple tasks.

I really doubt if many of you really understand how important it is to remember the ones here who are not terribly prolific in posting anymore. There are many many members out there who are facing things that they have never faced before with HIV, and for some of you who don’t want to hear that HIV is a deadly disease that will really screw up your body regardless of the kind and abundance of medications out there; I got news for you, you need to be paying heed to their experiences and to their challenges. There are a few members of this forum who are experiencing some very dastardly effects from not only the virus but the therapy. They have been made to feel by other members here, that nobody wants to hear the unvarnished truth, because they refuse to think that maybe the description of HIV as a “MANAGEABLE” disease, could possibly be a HUGE PILE OF SHIT! For those, I simply say, “Listen up; don’t diminish facts of life for some members here, your ignorance of this disease will kill you!”

Thanks for being there, and reading my “stuff”.

Thanks Eric, for the inspiration.

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

Moffie your unvarnished truth is your truth and no one is belittling it.

For many others their experience is much different - especially the newly infected. You shouldn't belittle theirs or make it seem as though you have some clairvoyant ability to predict the "ravages" you know they will expect. It's fearmongering and it's really really innacurate.

It annoys me to no end that people can't be happy for people who are "managing" this disease and choose to be hopeful - instead they need to twist it into some dark journey that you are surely destined to be ravaged by because Moffie says so and since he has been diagnosed for so long his word is what will happen to you.

The utter disconnect from what I read from you and what I see in my daily life is astonishing. Many of us ARE doing quite well, and don't need to apologize for that and are not in denial. Sorry if you think we should be miserable, and fearful, but many of us are not.

Choose hope over fear.

Mike

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

I get what I give because giving and receiving are not separate things. They are one. What I do is what I get. What I get is who I am. If I love, I feel love, I feel loved. When I give with an open heart, the open heart is what I get. There are no limits, no amounts, and no standards in this business of giving and receiving. Whether it is offering a blessing to the person in such a hurry that cutting you off in traffic seems their best option, or meeting a stranger with a smile, or picking up a gift for a child who might not otherwise receive one, or complimenting someone who has brightened your day, or remembering to say thank you to a loved one you might tend to take for granted, what you give is what you get.

This absolutely and totally applies to you. I would dare to say there’s nary a soul on this site that hasn’t connected with you on some level, in some way, at some time, all based on the utter open reality you express. I’ve laughed at your foibles, been touched at the depth of your affection for your “Sweetie”, pondered the fate of snakes in your garden, wondered what happened to the wild pigs, and absolutely totally and completely identified with your viral days. I for one hope you never quit bitching because as you journal your own experiences you vividly capture the events in my own life. I need your cranky, cantankerous, pissy, addled, gone to hell in a hand basket days to validate my own. You, and to a greater degree this site capture what life with HIV is like for me. I read in rapt attention the “My Dirty Little Secret” thread. I don’t know whether to be relieved or pissed that so many share my mental affliction. I truly don’t have a insightful ending to this post. All that’s left for me to say is that Tim you sound perfectly human to me. And I for one am damm glad you are. I worry a touch though, worry and wonder if you can look in the mirror and love the one your with. Do you give him as much grace as you give the members of this site?

(Did you get my PM about the charger? It’s a Curtis 24v, about 8x11x2 in size. Completely self-contained, would fit in a book bag with ease. I may be able to re-program it to other voltages, let me know if you’re interested)

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Life is short, Break the rules, Forgive quickly,Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

Tim once again you hit the nail square on the head..we all need to be reminded occasionally that we are in this together..I know from my experiences that there are some real dark days ( start thinking /writing final instructions/ get insurance policy out ,etc) but then there are those great days when the world is a great place and the sun is shining on you and those around you ... so far ( >10yrs) the good days far outnumber the bad...,hopefully that will continue......I wish that everyone could have the support of a close one like your "sweetie" to put up with the full range of crap that comes with this virus but I know there are many who are/ or at least feel completely alone...those have to be the darkest days..all alone... having you and the rest of the "wise ones" is a tremendous lift for those who do not have a "sweetie" or anyone...I hope in those annual allocations there is some consideration on how to "connect" the lonely ones with the rest of us......so blast away whenever you need to and virtually all of us will understand.....most of us, I think already, understood...

Hi Tim,Thank you for posting things that I feel on many, many days. I wish I did not understand what you are feeling, but I do. I just wish I had no idea.

I need you to post both the good and bad, I need everyone to post their good and bad days. The good-day posts make me realize that tomorrow is another day, and the bad-day posts tell me I am not alone in my sufferings.

Thank you for the proactive approach that you have in regards to this disease... I feel sorry, and yet glad for those that have come after us that are able to find nothing but hope with their diagnosis.. I pray that they are right.. for me... I'm not going to have what they have.. but that doesent change the fact that i fight for what i do have on a daily basis...

I was moved by what Moffie said. I do not pretend to know what anyone is feeling when it comes to having this virus. It affects us all differently. I have been poz for 9 yrs w/o meds. Am I happy about that, you damn right I am. But I am also realistic enough to know that my body can't fight it forever. I have had the disussion with my doctor about starting meds and which ones I will take. When the time comes, I will be on atripla and abacavir. Since I do not know much about meds and their side effects, I value the opinion of those who do and the struggles they may have. I do not see Moffie as being "the voice of doom", just a man who is sharing his experiences. I live one day at a time and make the most of it, even when I don't want to get out the bed, I am just grateful to still be here. I am new to this site but has enjoyed reading over the post, I do feel sad that someone has to try to slam someone for their opinion or experiences. If anything, share what your day is like living with hiv or the experiences you have gained, good or bad, because you never know it could help someone newly diagnosed or someone in the same stage as Moffie or yourself. We have enough negativity in our world already, why add more?

I enjoy Moffie's personal accounts of his experiences and my intent is not to slam those experiences or in any way do I think they should be stifled or ignored (who the hell l am I to even think something like that?). They are very important and, for the most part, I enjoy reaidng them when I have a chance.

My issue is with this line:

Quote

There are a few members of this forum who are experiencing some very dastardly effects from not only the virus but the therapy. They have been made to feel by other members here, that nobody wants to hear the unvarnished truth, because they refuse to think that maybe the description of HIV as a “MANAGEABLE” disease, could possibly be a HUGE PILE OF SHIT!

Of course it's his opinion, and he has a right to express this view (which he has done many times) and I have a right to say I think it's horseshit.

If my forthright opinion is construed as "slamming" by some, then so be it. But I won't hide my view (which many other poz people also share) to placate political correctness. I hate having HIV, but I'm managing the disease - as are many others. That's my truth. I also don't believe I will ultimately be "ravaged" anymore than I believe I will be hit by a car. Yet both may happen. Though both probably won't.

I also don't know what comments or diary he is basing his statement that others don't want to hear the "unvarnished truth." I've yet to get the memo on what the "unvarnished truth" is - especially when dealing with a constantly evolving field of treatments and therapies and medical knowledge.

I'm just saying is when you don't know what the future will hold in 2006 with great advances in medicine and research for many of us, you should tread carefully when predicting other's destinies.

Ciao!Mikey

« Last Edit: October 11, 2006, 10:02:41 PM by StrongGuy »

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

I am one of those people that have found that HIV is NOT a manageable disease... yes... i still have a pulse... but as for quality of life... not so much...

if you are doing well .. I'm glad ... if you aren't.. then i hope you will be able to talk about it here.. we all are in differant places.. and no... I'm not 59... i turned 40 in April... I've been poz for 20 years... i think that i might have learned about it in that amount of time... i will gladly read about your experience.. please show me and everyone else that sentiment..

Lis your experience is your experience and am well aware you agree with Moffie, as you have stated solidarity with him on the issue of manageability in the past.

Simple fact is I know many other people who are battling this disease (including myself) for a wide range of years who disagree with those who say it is "not manageable no way no how it never is for anybody cause we know" and the belief that your ultimate fate will be a loss to the virus and an inevitable degredation of your being. For some it's not manageable, for many others it is. I would never dare to predict one's future, or deny their truth, when the management of this disease is evolving in the medical arena in ways we can only begin to understand.

Further, when someone calls my view bullshit (sorry, I mean "horseshit"), and talks as if we're just naive souls, and that many of us don't want to hear the "unvarnished truth" (according to Moffie - which I still don't know what factual evidence he bases this), I'll always respond in kind because I know there are many people (who may not want to rock the boat or are busy elsewhere) that agree with me because of their own personal experiences and/or knowledge.

As for your knowledge and length of infection, not sure why your qualifying it because I never questioned it or his. I merely questioned his conclusions and "unvarnished truth" predictions.

Lastly, if you genuinely care to know more about my experiences, you can check old threads on the other forum or send me a PM and I will share if your genuine sentiments bear true. I'm not of the school whereby one has to lay their personal journey all out on an open forum, so there will be no such post here.

Ciao! Mikey

« Last Edit: October 12, 2006, 02:19:41 AM by StrongGuy »

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

I found out in the meeting yesterday, that indeed we have a problem. Last year at this time we had a total of 90 HIV infections that had been reported for our four county area, (13000 sq mi) and now this year, 192 and climbing. Out of those we have a total of 89 clients, which means the rest have other insurance sources. Unfortunately, the total of women infected is where the growth rate is happening most rapidly, which is not necessarily a shock, but sad none the less.

I see that my thread has caused one member some heartburn, and that is obviously not unexpected, due to my very curt and dicisive ending to the original post. That is fine, I certainly don't expect everyone here to fall into line and believe or even like what I type. That is why God/ess made people with different minds, hearts and body types. We all have to be different. Mike/Strong I want to let you know one thing..... Yes, HIV was managable for me and many others here for many years. In my case, it was 11. I started and sold two businesses during that time, sold three pieces of real estate, started two non-profits, and pretty much kept myself very busy and healthy for the whole of the 11 years. Then............ I was introduced very unceremoniously to DEATH, and all the reality of that step. I didn't, I kept going, MANAGING, and moving forward. That was a full 12 years ago, so the many details of misery that I have experienced with this disease have pretty much happened recently. Yes, I am 59, but there are some here that have answered this thread that I look up to as elders, and have been in this struggle for at least as long as I have, and thier words seem to buttress the points that I have made about the "reality" of survival with HIV. Enough said, I know I will not change your mind now and I really don't care to, as I realize that you are well entrenched in your beliefs so that is fine. I would just request that you come back in 20 years or so, and please let us know just how manageable HIV is in your well managed life at that time.

For all the rest of you, I want to really thank you for the words of encouragement, for you will never understand just how important they are. Today, I seem to have woken up with the same pain in my gut, and can't really recognize it as something that I am familiar with. I do know that if it persists that I will certainly have to have it checked out. Oh glory, not that wonderful camera on the end of a wand that has to be swallowed down to the stomach. Yeeeech.. I hate that thing!

I will keep on keeping on, and as the plans for the AIDS Walk proceed, there seems to be other things which are falling right into our laps for the future. Yesterday at the meeting, a lady gave me a folder from a private Counseling agency which has been started by someone who knows that the mental health provider in this area is only in it for the money, and so they started their own agency. They want to work with us, and actually have offered their office site for holding our first ever peer support group. What wonderful news.

Thanks all you guys for being there and for supporting those of us in the work here in the bush land of the great United States.

In Love, and Appreciation.

« Last Edit: October 12, 2006, 09:20:37 AM by Moffie65 »

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

It's based on life-experiences and a a lot of hard-work. I know what it's like to be in a severe depression. I quit my job, cut myself off from family and friends, was reduced to sitting in my lounge chair and watching TV for hours pondering the least painful ways to take my life. The great job I had was gone, the Master's degree I worked tirelessy for meant nothing to me, my outgoing nature disappeared, and my good looks felt ugly.

But now I'm doing great. It was a journey - depression runs in my family - but I have it control. And when I was in that dark place, the only thing that kept me going was the slightest bit of hope. You may be turned off by upbeat posts, and we're all different. I feel they are essential and accurate for a good number of us.

And in the last 6 months, the diversity of opinion that has flourished on here has, IMHO, made this a better place. People need to know others are doing well on meds. People need to know they can work and have a social life and things can get better. You also need the other viewpoints.

And when I hear people dismissing hope or other's viewpoints as glib or naive - or as if they have all the answers - then I will speak my mind. Blanket statements defining future despair as inevitable "unvarnished truth" is horseshit. I earned that right to be hopeful - and luck had nothing to do with it.

Mikey

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Thanks Mikey for making this observation. I don't think we should assume that if someone is doing okay, despite being HIV positive, that they have somehow lucked their way into this predicament. Living is hard work.

Diversity of opinion is good. There aren't any right or wrong answers here. I think all anyone wants is to not have their experiences discounted, dismissed or trivalized because it doesn't meet the mold.

We all react to HIV differently. Hell, we all react to life differently.

Moffie, even if you believe that it is inevitable that our bodies will give out from the disease and/or the drugs, what useful purpose does it serve to keep on repeating this message? I am not denying that many people are having a very hard time with this disease. But what are we supposed to do with your warnings about not keeping one's head in the sand and that it is inevitable that eventually our bodies will give out from the disease and/or the drugs? Are we supposed to live in fear of that "inevitability."

I think that all we can do is to take as good care of ourselves as we can and hope that new therapies will continue to be more effective and less toxic. I've been positive for 21 years, and I've had my share of very bad times with this disease. But the fact is I feel and look healthier now than I have in years. Can this change? Of course it can! But how will it benefit me if I focus on the possibility of things turning bad again?

As I reflect on my 13 year diagnosis anniversary, and think about how I thought I could just ignore it and it would go away.... I sure got a rude slap upside my head three years ago didn't I!!!! HIV and Cancer, what a combo!!!

I'm back in the middle of my 3 month and annual tests. Seems they keep adding more and more.

I came in here tonight just to ask you for some information and ran into this post. Thank you for reminding me I'm not alone here!!

What I wanted to get from you was what you said you used to help your PN.... seems my poor HIV - hubbie is getting it. He's starting physical therapy in a few weeks, loads of tests, needles being poked every where, diabities tests, thyroid tests, MRI and a bunch more that I can't think of right now. Now it's my turn to be the rock!!!

First off, thanks Nancy for coming into the thread and giving us an update about what is going on in your world. It pains me to hear that hubby is now having issues.

There is another thread here from Jeffery about our PN problems, and there seems to be a new drug called Lycria or something like that, and I think I am going to have to look into it also, as my PN is growing ever more painful and the mobility scooter is going to have to stay handy. I noticed the PN growing more intense around July, and has been getting worse again. Oh well, time for another drug trial. The Alpha Lipoic acid that I was using was fine for awhile and is fairly good for a temporary relief of say a couple of months, but then seems to fail just like everything else.

Jeffery, thanks for the comments, I would love to make your appointment but we will see.

For Mikey, Cliffey, and Allang, .......... You know it is really interesting that many here do understand the english language and it was very clear to many readers that this account is of my life, and nobody elses. My little dig at the end seems to have really caused some of you to get your panties in a twist, when really what I was doing in this account is telling you all about issues which are either related to HIV or the therapy, in ways that you will obviously not get until it happens to you. That is OK and I don't give a damn if you like what I write or not, as this is my world and my reality.

I am not making up the fact that the enamel is beginning to flake off the surface of my teeth, due to either HIV or the therapy. I am not creating an "October Horror Story" in telling you that HPV is an issue with HIV, and that many of us have to deal with it regularly. Why the hell does my life and the account of my miserable current state have anything to do with you, or how you see your infection? Whether or not you find value in me pointing out some of the common things that many of us experience daily; is personally not a concern of mine at all. I just know that when I face the future, I want to do it with knowledge and understanding of the disease I am living with. If something is printed here that I can learn from, then fine, it might give me a heads up to be aware that something in my future might be coming that I can have knowledge about and deal with ahead of time.

I humbly suggest that next time you see a thread authored by Moffie65, you simply pass and move on to the next one. Coming in here and frying my belief system because it doesn't fit into your picture of "Hope", well, sorry, hope doesn't help me one bit with HIV. Never has, never will.

Iggy, I am sorry to hear that you have had issues lately, and hope that you are able to come through this time with some good outcomes. I think you are strong enough to do so.

For those that have issues with me, here is a proverb from Kenya. HE WHO IS UNABLE TO DANCE, SAYS THE YARD IS TOO STONY.

Thanks all, and In Love.

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I really doubt if many of you really understand how important it is to remember the ones here who are not terribly prolific in posting anymore. There are many many members out there who are facing things that they have never faced before with HIV, and for some of you who don’t want to hear that HIV is a deadly disease that will really screw up your body regardless of the kind and abundance of medications out there; I got news for you, you need to be paying heed to their experiences and to their challenges. There are a few members of this forum who are experiencing some very dastardly effects from not only the virus but the therapy. They have been made to feel by other members here, that nobody wants to hear the unvarnished truth, because they refuse to think that maybe the description of HIV as a “MANAGEABLE” disease, could possibly be a HUGE PILE OF SHIT! For those, I simply say, “Listen up; don’t diminish facts of life for some members here, your ignorance of this disease will kill you!”

This comment begged discussion. If not, then what's the point of saying it in a public forum? It's inflammatory and not true (IMHO).

Please feel free to start another thread to discuss my "Inflamatory" opinions then. I am growing tired of you, Mikey, and some of the people here who are living with blinders on. That is my opinion, it will not change when you so very skillfully use the bold function on quotes, and it will not help me to overcome the disgusting issues that I am currently dealing with DUE TO THE PRESENCE OF HIV IN MY BLOOD AND BODY Nothing you can say or show me will change the current state of affairs with MY] body and my issues. Please kindly go make your own thread. I am through with you.....

In total frustration.

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I hear you. Loud and clear. I also hear those who are "managing" their hiv infection, due to recent medical advances.

What troubles me is the fact that the medical advances, while fantastic, are useless unless they can be accessed. What troubles me is the fact that the access we take for granted in the West is slowly being eroded. It frightens me that people aren't out in the streets, like they were twenty years ago, demanding universal access to the meds for those who need them. It's worrying that hiv is being flat-funded. Complacency and "I'm alright Jack" scares the living daylights out of me.

The unknown quantities of long term side effects also troubles me and troubles me all the more when I see newly infected people rushing towards the meds when they probably don't actually need them any time soon.

We NEED to know what hiv is capable of doing to us. We cannot afford to turn a blind eye just because we have a script in hand for the next three months. We cannot afford to ignore the long term effects our hiv veterans experience. We need to know what's in store with long-term med use so we can demand people aren't being put on meds needlessly. So we can demand the medical establishment takes our concerns seriously and remains vigilant in their watch over us. We need to know what hiv and the meds both can do to us in the long term. We're now promised that we can live a "normal lifespan" and it's unthinkable that we cast aside the experiences of long-termers because our own gardens are blooming.

Tim's reality may well be our reality one day. It's one thing to hope that it isn't, but something entirely else to pass his words off as nothing more than doom and gloom. It's a vision of the future we all need to be aware of because it is so very possible for each and every one of us. How does that saying go? Those who do not know history are destined to repeat it. We ignore our hiv veterans at our own peril.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Well Jeff if you are part of Moffie's "all knowing I know your future" crowd and confident I will not be managing this disease in ten years, then that's your perogative and I appreciate your support (sarcasm).

I'm glad I have encountered people in my daily face-to-face life with diverse HIV positive backgrounds that respect, understand, are open to debate, and wouldn't dare predict my future or anyone else's. Positive people who hope treatments are getting better, understanding of the virus is changing, and can only wish those diagnosed (been 6 years for me) live long, manageable lives.

You'd be shocked at how many people in my groups tell me they don't share on forums like this because they are living their lives and managing the disease and don't have anything in common with doom and gloom people who try to predict their futures and shut down anyone else. It's too bad because they'd have a lot to contribute, and there are lots of great hopeful people on AIDSMEDS who they could share with too..

But it's really true when they say misery loves company.

As for talking to you in ten years, Jeff, I'll take a pass. Unless your God, your opinion and future diagnosis of all of us means absolutely positively nothing to me.

Ann no one is saying (at least I'm definitely not) that Moffie's life experiences are "a vision of the future we all need to be aware of because it is so very possible." Of course we need to vigilant. We need to know everyone's experiences - good and bad. The issue I have is that he paints it as an inevitable all-encompasing destiny for everyone. He's made that quite clear in this post and others. I know you know that.

Moffie I'm also aware that you're not going to budge on your mantra that we'll all be miserable in the future. I've known that from the beginning. Others have told me it's a lost cause to even try to debate it with you. But I will continue to share my point of view.

Ciao!Mikey

removed comment about PM - sorry for the mischaracterization as I'm not familiar with the PM system here.

« Last Edit: October 13, 2006, 03:20:15 PM by StrongGuy »

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Everyone has their good days and bad ones… this is obviously one of Tim’s bad days, and he posted about it. Nothing wrong with that, and I think it is important for all of us to admit that we do have our bad days and just as important, we should write about our good days as well. WE all know that life with HIV is not a picnic – a given. However, it is not all doom for everyone. We each have our view on HIV and what it does to our bodies, mind & soul. We are all different and respond to medications differently, as well as our bodies’ own response to HIV. Tim has given his account… and that’s all it is, his account and his life.

Not everyone manages this virus in the same way, and those who are managing their virus as best they can try to hold on to some glimmer of HOPE. I’ve managed my virus for the past 6 years with HOPE and trying to keep a positive attitude. Yes, I have my bad days, but the good ones far outweigh the bad. Truth is, without any hope, I believe I’d be back in a bar drinking myself to death, as I did for 11 years before starting meds in 2000. I’m sure that many who are managing in some way do have their bad days. I think it goes with the territory.

It’s apparent that Hope is not within your reach Tim (you have stated so,) but I don’t think it’s wrong for others to disagree and/or to share their experience of managing HIV as best they can, while holding onto hope at the same time. Remember, WE are ALL different and not everyone will manage in the same way. Just the way it is… But statements like this, “For those, I simply say, “Listen up; don’t diminish facts of life for some members here, your ignorance of this disease will kill you!” are condescending and dismissive of others’ unvarnished truth. We all have a right to express our truths as well, whether or not we like it. You have stated your truth, and rightfully so… and yes people should at least look at it, but there is no need to dismiss others and their account of living with HIV.

Naturally I worry about the long term effects of meds and what HIV has been doing to my body for the past 17 years, I'd be a fool not too worry, but I won’t wallow in it for the rest of my life, however long or short it may be. I also don’t enjoy waking up every morning to shit my brains out until noon and feeling tired all the time, but I carry on and will continue to hope for better in the future, as well as stay pro-active in the HIV world because that is all that I can do. And until there’s a cure, I don’t think any of us will ever feel totally secure.

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"People grow through experience if they meet life honestly and courageously. This is how character is buit." Eleanor Roosevelt

The reason posts like this are important, is not so much for the posters, but the lurkers. There are thousands who read these forums each day and posts like this just serve to reflect one aspect of HIV infection. I agree that HIV can be "manageable" for some people, but I also know the danger of becoming complacent. I also know the heartbreak that even when you do all that you can, sometimes it is still not enough.

I believe that sometimes we forget that we do not share our lives in a vacuum. Just imagine if we were to only push one point of view regarding HIV, say the "manageable" angle. What happens then when readers come here and look to share experiences, but because they are not in the "manageable" group they find no solace. Do you have any idea how hard it is for some to read about HIV being so "manageable", when all of their drugs are failing them? How hurtful it can be for them to think that there is something wrong with them, because everyone else seems to be doing fine.

We are in this together and when we share our utmost horrors with this family, generally we are just looking for acknowledgment and validation. As Tim said, these are his truths and there are more of us facing incredible challenges than many of you will ever know. And that is great, but just as you want to share your positive experience with HIV, it is no different than what Tim sought to do.

We are here to share information and I like to take all the different opinions into account, but when we start to squash other posters, then sharing becomes just that much harder.

Trish I agree with you 100% and largely agree with you Killfoile (who woulda predicted that a year ago?)

As I've said, we need diversity of opinions. Speaking only for myself, there should always be posts on the rough times with the good times (how crazy would it be to sanitize this place into some happy-only land?). On the flip-side, how fair would it be to shut-out those who are having manageable experiences? I understand the fear other's have that Killfoile pointed out, but we can't live in a bubble. We need to share or success too. I still have rough times. But for me, overall, it's quite manageable. Just my truth. And it's not an exception, or just because of luck. It's a reality for many people with access to meds/healthcare in 2006. Not everyone, but many.

That's all I'm saying...

I'm outta here for a long relaxing weekend vacation...Mikey

« Last Edit: October 13, 2006, 03:22:41 PM by StrongGuy »

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Warning: This is a percoset induced posting as I just had my wisdom teeth out yesterday!

Despite having side effects from my current regimen which may be unmanageable to some (like fungus on my face, poor sleep and periodic GI issues) I choose to think I am managing fairly well to the alternative. I do appreciate posts from those who are experiencing more advanced issues because they are a warning to me to take care of myself now. Because of the veterans, I do all sorts of things I probably would be more complacent about, such as treating my teeth w/ fluoride, taking fish oils, limiting my alcohol to save my liver, donating time and $ to HIV causes, being political, monitoring my labs, cranking up my savings rate and being thankful for what I do have. I think in a nutshell I am doing what Moffie suggests by not sitting on my laurels and being proactive. I hope amongst all hope that you are wrong about my prognosis though, Moffie. I believe in preparing for the worst, hoping for the best and taking whatever comes but that doesn't mean I have to label this all as unmanageable (for me) and giving up. I would not be doing all the stuff I am doing today in preparation if I truly took your frame of mind. I'd probably go back to partying and killing myself quickly.

I think we all need to get off this war of semantics and stop trying to shut each other up. It seems to me most of us are doing the right things in life by finding support on here, taking our medicines and discussing issues. So what's the problem? If believing I have some control over my life is what is making me tick, then please, do not take that away from me.

I for one am glad everyone is here. Times are a changin... Happy I am that we are not here talking about how many loved ones have died this week that we know... I will never look at AIDS as black or white, right or wrong or "just to prove a point" cuz everyone has one..

I'm with Jason on this one. I have become too tired at times reading certain posts that focus on the "dooms day" that lies ahead for people with this disease. And I just can't be exposed (excuse the pun) to it - it wears me down, which is the wrong thing to let myself do. I remind myself every day that I could have something else that would kill me in 6 months, no question. Cancer seems to be everywhere around me lately - friends, family, celebrities.

I think we need to stop looking at the collective HIV+ population as a group of people dealing with a disease, but rather one of many people dealing with life's trials. We are not the only people out there suffering - beit heartache from diagnosis or the ravages that Moffie talks about. We are human, and all humans suffer from pain, loss and death. We're no different.

To all of you out there - GET BUSY LIVING. Death comes for those who are more likely to open the door and let Him in.

Thank you Kilfoile, (Joe??) for pointing out that this post is such an important one.

As a long time "lurker" of this forum I have gained a great insight; not only into this virus but it's many and varied effects on different people, also, the greatly varying effects of the many drugs available. This has only been possible because the people who post here and share their lives with us (me) are as varied as the information itself and so is the personal insight into their life with the virus/drugs.

I have been, and am currently living a life not much different to my "pre-diagnosis" days, except now that the meds are controlling the virus, i don't have quite so many minor ailments as before (foggy brain and whiffy farts excepted). I have access to fantastic medical resources; but i also know that i am one of the lucky ones.

I haven't had to live with this virus (as an infected person-but maybe more of that later) "pre HAART", when death from AIDS was such an inevitability that testing the meds on pozzies was really not an issue - if they worked "WHEY HEY!!"; if they didn't what the fuck you'd have died anyway so; "nothing lost"; nor have I been infected for a great many years. I also haven't had to live with the long term effects of the meds either.

I have been made fully aware though, both through conversations with my medics and information gained from the web, that I am now at much greater risk of a great many illnesses that I wouldn't have been if I wasn't poz; liver disease, cancer and the more extreme symptoms of many common ailments to name but some.

For all those who replied negatively please go back and read Moffie's original post again, only this time leave out the last paragraph. I read the post shortly after it appeared here and have since read all of your responses, most of the negative ones seemed to concentrate particularly on this last bit.

I have read and re-read; and all I read is one guys insight into what he is going through at this particular time, it is just his personal view on his life at the present and the possible future for many of us as he sees it. By all means keep hopeful, it might, one day be your only option.

I read this post, not only as an insight into Moffies present life, but also as a cautionary tale for us all, food for thought that's all.

At this point in time, there are many ailments that affect us that can't necessarily be blamed on the medications we take, but are just as likely to result from the viremia itself. There are some direct effects from the medications, but they are not present in everyone who takes them. In addition, there are not a lot of studies to say whether early treatment is better than delayed treatment - or vice versa. We do know that uncontrolled viremia is detrimental, and not just to CD4 cells. Some of what is blamed on the meds may very well be due to effects from the virus itself. Indeed, the age at which you contract the virus seems to play in how well you respond to meds, and handle their side effects.

I think it is premature to advise people to avoid antiretrovirals at all costs, until their CD4s are extremely low. There is evidence that those who begin treatment with higher CD4 counts respond better to treatment, with less side effects. There is also evidence that some do not prosper long term on the meds. Why? The fact is, we just don't know. It is up to each individual to research the subject and decide, along with their doctors, the best course of action in managing their infection.

I find posts like Tim's helpful, not so much in seeing what is happening to him, but in seeing how he lives with it. I certainly hope I am not so plagued, and I count my blessings that, at this point in time, I am not, but it is helpful knowing what the future may hold for some of us, and how one person handles that struggle. Some manage the disease, some find it unmanageable. Everyone's experience is not Tim's, but Tim's IS real, and his thoughts about it should be considered.

Also, this IS a support forum. If we're gonna cheer folks good lab results, then we should at least listen with concern to the problems others may be having.

What Tim has done here is simply a matter of him expressing himself with his life experiences. Through this, he is sharing the REAL In's and out's of his life concerning HIV. If you listen, you can learn something here that may help you avoid that pot hole in your road in the future.

He is honest in his expression and he has every right to feel what he is feeling and to express whatever he chooses to do so. Just as he said; "Some may like his posts, and some may not". I believe that Tim has illustrated the realism with HIV ever so beautifully. Acceptance is the key. Understanding is the key. Communication is the key. With these keys in your life, it will unlock a lot of doors for you.

Just as Whizzer and some of the others have said; I DO agree that it is truly inspiring to read Tim's threads when he makes his posts about real life. Once "acceptance" or the "keys" to your life are implemented, then you will find that it will be much easier to cope with what is in fact your life. Please DO take a look into what is going on with your life and you will see things a lot differently. Take the blinders off and look around you and see what Tim is talking about.

Some people read what they want to read, they hear what they want to hear, but when it comes to the "unvarnished" truth, most people stop listening all together. We are all in this together. There is a lot that we can learn from each other. As far as the negativity goes, you are only hurting yourself in the long run. Take that negative and turn it into a positive and see that, Tim really has a valid point in what he is saying about real life.

If, his post is unclear to you, by all means print this out or bookmark the link and come back a re-read what he has written. It makes a lot of clear sense. At this stage in our lifecycle, you would want to absorb as much as you can as it may make a difference in your life. Also, by all means, you DO want to live a positive and happy life. Accept it, change it if you can, and move on. Do not let the external anxiety create an unnecessary battle with your internal anxiety. It only leads to other things in your life which we all do not need.

For the newly poz who are following this thread: If you choose to re-read, allow Moffie's OPENING STATEMENT to really sink in. Doing that will help tremendously with a re-read. His opening statement is tailored to you for the most part.

For many of the newer members here, it is important for the text and meaning of this post, to recall some personal stats.

Age 59HIV+ Since ‘83

He's 59 years old and he has been fighting for 23 years.

In terms of manageable vs. barely manageable, both truths, no, wait, make that: Both truths and everything in-between are real and need audience because knowledge is power and we collectively have years of knowledge.

I understand where Moffie is coming from. I refused to believe HIV would kill me for the first ten years, but it was the drugs that fucked me up. Maybe people dont get sick from them anymore, I dont know, but I do know I was miserable for at least 6 years. My body and face deformed, spending all day by the toilet. A double frozen shoulder,from crixivan, that kept me in bed and on pain killers for the better part of a entire year. The entire time, my drs said it was all in my mind. Fuck that. I still dont think hiv is gonna kill me but I do believe the drugs are doing damage that will ultimately screw me up in some way.Knock on wood, I am tolerating my new meds rather well. I can not eat any sugar or carbs with hiv meds or I will be a fat slob.

I'm never sure what is meant by the use of the term "manageable". It's not just about taking pills, suppressing VL and waiting for one's CD4 counts to rise, but looking at therapy within the broader context of one's life.

Dare I say taking a holisitc view?

I generally only hear the word manageable used by persons wearing white coats, professional HIV conference attendees, beneficiaries of the AIDS industry and the newly diagnosed. All worthy sorts, don't get me wrong -- but you'll forgive Matty the Damned if he doesn't place a huge value on what these people say.

Tim, I realize what has been said on either side of this - I suppose you could call "debate". I have learned allot just within the confines of this thread. I am not sure we can ever arrive at any one conclusion being absolute or definitive. We have had many threads like this before. Being only 11 months into this, I know I need to hear and listen and be cognisant of the fact that many have been down longer roads than many of us here. I and many countless others do value you time, your words, and your genuine honesty. I wish you would come back and continue your "work" here...

Thanks for the post, And the reminder, of how "not so manageable " HIV is. I was diagnosed in 1985. Went until 2003, before I began any medication. I was healthy, and "managing my virus" through many of those years, prior to starting on meds, but I was also living in a cave, for a good portion of those years.

Then the meds began. They did save my life, I had minimal side effects from them,( in the beginning) But things were certainly not perfect. But I did not expect "perfect"

After beginning on meds, tinnitus started. Periferal Neuropathy started,cholesterol started going crazy, the "extended stomach"-- most likely from the "Viread "started.The muscle aches started, the "brain fog started, teeth started cracking.... I am sure there are many, that would have said "fuck it", the hell with the pills. Don't get me wrong, I am glad I am still here, but it has certainly not been an easy road, by any means. And I am fortunate enough to have good healthcare and insurance. Wonder what happens, when I am no longer able to work. Because, I will not always be capable of working. This I know for certain !! The meds will take their toll. They are very powerful drugs.

I will be on meds 3 year next week, and I am very well aware of the changes that are taking place in my body, after living with now for 21 years. I often wonder, the strength and will power, and the determination required, for those that have been on meds, much longer then myself.

And lets not forget the facts :

In 2004, there were 15,798 deaths in the United States, due to Aids. I am not sure of the Stats for 2005.

Since record have been kept, over 500,000 people have died from Aids in the United states. Now some may say "geez" Ray, such doom and gloom. But those are the facts and that is the reality. And that is my reality. It gets tougher by the month...

I will be on meds 3 year next week, and I am very well aware of the changes that are taking place in my body, after living with now for 21 years.

Ray - Did your doctor say these physical changes are from the meds? This is a genuine question. I am not trying to be contentious in any way. What scares me is this: It seems the global medical cosmos does not *truly* know the answers to our questions. The grey areas seem infinite.

Matty - Indeed. In the holistic world, health has a two-fold definition: the absence of disease AND the presence of mental/emotional & physical vitality. The allopathic world seems content to equate health with the absence of disease, period.